Sunday, December 19, 2010

Hooray for the Holidays

So I am beginning to relax and de-stress. It has been such a crazy year and I have been working so hard. I have had quite a few challenges with my colon and the rest of my body but this week and the week after, I will be celebrating.

I went to the movies today with my daughter. Her idea. She is 14 and still wants to hang out with me. Life couldn't be better!

Tonight I played a little piano and my wonderful man played along with his guitar. It was awesome.

My colon is a mess but it is not nearly as bad as it could be and I am having so much fun! I am laughing and lounging.

Life is good. Don't forget that.

Saturday, December 18, 2010

I have continued to go for Chinese Medicine. I do believe that it is helping me to feel better. I am jut not sure if it is keeping me well. Hard to be sure what the effects are.

It looks pretty nasty! I was surprised when I saw the pictures but it really doesn't hurt. I do have one of the best marks ever on my neck from the cups today. But the treatment seemed to totally loosen up my back. I was able to crack it and moved much more freely. I probably enjoyed a good 8 hours before my back started to ache again. I am pretty sure that the pain in my back is from my colon but what do I know!

Tuesday, September 14, 2010

To Eat

I have decided to change my diet. I have been avoiding too much fiber since my "minor flare" started back in February. I have been avoiding raw vegetables, fruit whole grains of all sorts and I am just tired of it.

So I am switching gears. I am going back to my preferred way to eat. I am eating fruit for breakfast. I have fruit and veg during the day. I drink vegetable juice. This has helped me to cut the fat content significantly.

I am also cutting my sugar intake in half. I make sure I always measure and I hope that I will adjust to this soon. So far my coffee is a little unsatisfying but I know I will get used to it.

I am also not drinking as much wine.

I am continuing with the Chinese medicine and I am starting an exercise program next week.

So far it has been a week and I don't feel any different. Not worse or better. As long as I don't get worse I will continue because I know this is a better way for me to eat.

Today I ate grapes, carrots, an apple and peas. Yum.

Saturday, August 28, 2010

Chinese Medicine

So I have been swollen, most of my body, for weeks now. I can't take it anymore and the joint pain is ridiculous. I know I am flaring but my megga doses of mezavant, suppositories and enemas is keeping the blood away.

So today I tried something new. I went for a consultation with a woman who practices chinese medicine up the road. After the consultation, I had my first treatment which was acupuncture, cupping and massage. I might even feel better. I am not sure. The experience was pleasant and I am hopeful that it will help with some of my symptoms. I will go back again next week.

Has anyone tried this?

Friday, August 20, 2010

Legume Love

Legumes, I love you.

I loved you in the curry when you appeared as lentils and garbanzo beans.

I loved you in the quinoa salad all black and lovely.

I loved you as peas in my samosa.

However, you don't seem to love me as much as I love you. Couldn't you be a little gentler? Could you treat me with the same respect that I consumed you with?

Thursday, June 17, 2010

Paying for one night

I should know better by now right? Yes, I should.

A couple of nights ago I lay down, closed my eyes and began to drift into lovely nothingness and then my eyes popped open. I hadn't taken an enema. I closed my eyes again and so began the internal and very private conversation:
I will go in a minute.
Maybe I don't have to go.
What could one night hurt?
It shouldn't make a difference.
I am so tired.
I am so comfortable.
I should go.
I can't get up...

That was the last thought and then suddenly it was morning.

I have been paying for that dumb decision ever since! Do not skip a night. Do not miss your enema. Do not pass go. Do not collect $200.

Wednesday, May 12, 2010

The same situation

It has been a little while since I have added to this space. I think it is because there is little change, little excitement, little to report.

I am in the same UC boat as I have been for months. I have responded to the increased meds favourably but the effects seem to continue to be entirely dependent on the meds continuing. I am not bleeding or crying but I am uncomfortable to the point of often not eating all day so that I can work. I have some good days and some bad days. I have joint pain (it's in my hands this time). My teeth feel okay so I don't want to go back to the full dose of mezavant. I am still strapped to my box of enemas. I dream of eating with abandon and going to bed without needing to flex my muscles. I used to be able to do other things in bed.

I think I am going to go back to the probiotics. It has been brought to my attention that I might not have completed a long enough trial. So today I will start back on VSL 3 and hope that things settle a little.

Wednesday, April 7, 2010

No More I Say

It has been more than a month that I have been back on rectal meds. I am supposed to be using two enemas a day but I had to be honest with my doctor and tell him that it just wasn't possible since I have to go to work five out of seven days. So now I am supposed to use enemas once a day for 5 days and twice a day for 2 days.

As of this moment, I hate enemas. I know that is no way to feel about this simple method of getting medication directly to the area that needs it most. That is no way to show appreciation for the fluid that gave me such recent super speedy relief to the pain, blood, mucus and loss of bowel control.

But I can't stand it. I know that very soon it will be time to go to bed and that means enema time. I don't want one more. I don't want to insert anything into that area ever again.

Today I just hate enemas.

Thursday, March 25, 2010

Latest Doctor visit

I went to see the GI today over lunch. I'm still not eating much during the day so I didn't have anything better to do!

It went well. I am doing much better and my doctor seems to have realized that I have at least some understanding of my own body and how it functions. He has agreed that I should back off a little on the mezavant in order to get the side effects under control. My teeth are aching and my joints are beginning to hurt again and I am exhausted. The hair... well it's coming out in handfuls again.

He wants me to continue with the enemas for a couple more months. For the next month, he wants me to use two a day as often as possible even if I can only do that on weekends. After that, at least another month with a daily enema.

And I don't have another appointment scheduled. He told me to call him if I had a problem and after 6 months to set up an appointment (which will then probably be another 4 months away). So I will have some time to manage this myself and see what I can accomplish.

I think I am going to give VSL 3 another try. I am staying on my low fiber diet for awhile and once my joints feel a bit better I will need to try to exercise some.

Oh, and he didn't mention IBS once.

Tuesday, March 2, 2010

Dinner is my friend

For breakfast I take a handful of pills, a glass of juice and a cup of coffee. All are necessary.

For lunch I drink an ensure drink. I only like the chocolate kind. Sometimes I have some water and on very special days, I get a little more coffee. Some days I don't get to it and then at 3:00 in the afternoon I start to shake and can't think.

But dinner is my friend. I eat a full meal. My proximity to my own private toilet allows me to indulge myself in healthy portions of proteins and carbs. On occasion I even get a little cooked veg. Oh the glory of feeling full. I love dinner.

Thursday, February 25, 2010

Good News

I saw the doctor today and the results of my blood work were good. There is no sign of infection and I haven't lost a significant amount of blood. My protein levels were good and the inflamation has not gotten to my other parts.

Since my current flare doesn't seem to be effecting the rest of my body, we are going to try going back on enemas rather than going to a more serious medication. It seems the mezevant is keeping the rest of my colon from getting sick but is not enough to heal what has already gone wrong.

My drug store did not have any of my new enemas so I have to wait one more day before I get started and then I will have to figure out some pretty tricky timing since I am supposed to use them twice a day for the first two weeks.

I am not sure about this doctor. He has said a few more things that leave me unimpressed however, as long as he helps me find the right treatment to go back into and stay in remission I will stick with him.

Wednesday, February 24, 2010

Another Day

Another accident.

I made it into the house but couldn't make it up the stairs and into the bathroom. Once I entered the safety of my home, my sheer will that was keeping my colon calm was no longer enough. I couldn't hold on.

Mucus and blood.

I guess it could have been worse, right?

Doctor tomorrow. I have researched Imuran and asked others who have taken it and I think if he believes it is the right step, I am going to try it.

Fingers crossed.

Monday, February 22, 2010

My colon made me do it

Two hours before my alarm went off I climbed out of bed and ran to the bathroom to expel some blood and mucous. My colon made me do it.

I folded a pair of underpants and enclosed them into a sandwich baggy. I tucked this little package into the bottom of my purse. The underpants are black and match the lining of my purse. My colon made me do it.

Before I could finish checking my messages at the office I jumped up and ran to the bathroom. My colon made me do it.

Only half an hour later, I grabbed my coffee cup and raced back toward the bathroom under the guise of needing to clean my cup. My colon made me do it.

I left during the middle of a meeting of my peers. My colon made me do it.

I didn't help do the dishes after dinner because I had to urgently go to the bathroom. My colon made me do it... *smiles*

Sunday, February 21, 2010

He listened

I went to see my new GI last Thursday. He was about to tell me that my scope wasn't too bad, but he stopped himself and asked me how I was. I told him.

I told him how I slowly slid down a sticky slope into flare over the last 3 weeks. I told him how my pain has increased, how I am now passing blood and mucous every time I go to the bathroom, how my trips to the bathroom have increased and how I have started to have serious issues with incontinence. I told thim that all of this has resulted in my not eating the last three days until I get home from work.

He was surprised but he listened. He offered Prednisone and accepted my "no thank you". He acknowledged how difficult these symptoms make my day to day life and was glad to hear that I haven't started to lose weight. He sent me for blood work and to give stool samples and is fitting me in to see him again next Thursday over his lunch. He gave me the name of a new med that we should consider and be ready to discuss next week. He wants me to consider trying Imuran.

He is concerned that it was less than a year since my last flare, that I was on Pred so long last time and that I have had this wicked illness for 14 years. He thinks it may be time to step up the meds since my 5ASA is not keeping me under control.

I am going to read up on it. I know I will have to have lots of blood work in order to monitor this med but I also have a close friend who takes it and she has been healthy now for over a year when nothing else was working.

In the mean time, I am taking over the counter stuff to fight the urgency and staying close to the bathroom when necessary. I am also drinking ensure when I can't eat.

Hoping that things become clearer at the next appointment but at least this doctor listened.

Wednesday, February 17, 2010

Lost Control

It happened last night in my own home. I just couldn't make it.

I lost all control.

I was mortified.

Now I am scared.

Monday, February 15, 2010

After

Finally, I am getting back to this story.

Where was I?

I woke up! Yes I woke up and I was being wheeled down the hall on my bed and it was all over. I hadn't noticed a thing. What a surprise. I have never been put completely under before for a colonoscopy. This was good (no pain) and bad (no information).

My bed came to rest just down the hall from where I had been. I could see the curtained area where I had just had my test. I was covered with lots of blankets and my vital signs were checked. The nurse was friendly and good at her job. Before she left me to check on another patient she encouraged me to pass lots of gas.

I started to let go. What a fabulous feeling to just let the wind go with no hesitation. I watched the curtain and I passed gas. Then I stopped. It was a choice I made.

Another woman was wheeled into the area next to me (the other side of yet another curtain) and she was given the same instruction. She started to let it go too.

The nurse came back to check on me. I was doing just fine. I told her I had decided not to pass any more gas though. She looked concerned and asked why. I explained that my partner was out in the waiting room and he was going to drive me home. I explained that on many occasions I had found myself alone in a car with him and he had no problem sharing his gas with me. This time it would be my turn. I was saving my gas for the one I loved! She had never heard this before and she smirked at me. I smiled back. It was a good moment.

I was then moved to a chair in the hall. The doctor stopped by to check on me and he said it looked better than he expected. There was some swelling on the left side but not too much of my colon was involved. He confirmed that I should continue with the same meds at the full dose and that otherwise all should be ok. I told him I had some pain and he suggested that it could be irritable bowel.

For those of you don't know, I believe that irritable bowel is the answer when they don't know and I don't think it applies here. My pain happens when my UC is active. In that moment my joy was gone. Another specialist who believes in irritable bowel. Ugh.

I was glad to hear that my colon didn't look to bad and even happier that I was not told to go and get some prednisone. I am not happy about IB and I don't know what I think of this doctor know.

I had this colonscopy on January 22. Since then I have been bleeding. Sad but true, I seem to get a little worse each week. I now pass mucous and blood regularly with numerous trips to the bathroom every day. The urgency is increasing and I have stated to hold off on eating until I will be home for the day to make bathroom access easy.

I go back to see him this week. I hope we can come up with a plan to get this under control before it gets really bad but I am not sure how we will do that now.

Fingers crossed.

Monday, February 1, 2010

Before

I sat in the waiting room for a few more minutes and then a nice nurse called my name just a couple of minutes before my scheduled scope. I returned to the side room where my former doctor had questioned me and a very nice nurse asked me some questions (did I fast, did I do the prep, did I have someone with me, the usual). Then she checked my hospital bracelet and asked if it was me. (Since I was unable to sell even one ticket in my colonoscopy lottery, I had to take the test myself.)

She had me sit for a moment as she checked to see if they were ready for me and then I was called to go right in. I walked down the hall in my double hospital gown, black socks and blue paper slippers of my own free will. Waiting for me was a lovely little cubby with a comfortable bed with fresh white linen! Lovely.

They got me comfortable and then a lovel women began hunting for a vein on my hand. She found one and then spent lots of time cleaning up the blood that went everywhere. Seems she was still working out her technique. An anesthesiologist came in and asked a few questions and then went away again. I have very little memory of him. They rolled me over onto my side and then the lovely lady who poked me in the hand offered me a "shot of vodka to start" with a giggle as she held up a vile of clear liquid. I said sure, sounds great and then watched her put it into my IV line. Nothing changed.

I didn't feel it go in. I started to wonder what that was. Maybe it was just a relaxant. Maybe it isn't working.

And then I woke up.

Tuesday, January 26, 2010

Guess who I ran into?

The setting: I am sitting in the waiting room at the hospital. I look around and notice that this tiny room actually was a semi-private room at one time. It is obvious where beds were supposed to be and there were places for medical equipment to to plug into the walls.

There is a man and his wife sitting in front of me. He is ready for his proceedure. She is closing her eyes but holding a book. She is too tired or stressed to read. He looks calm. Notices my watch and reaches into his backpack and puts his watch back on.

There is a man sitting out of sight around the corner. A nurse calls his name and introduces herself. She asks to see his bracelet and reads his name out loud. She asks him if that is him. He laughs and says "I don't know anyone who would want to pretend they are me right now". The room rang with laughter.

There is another woman sitting to my right. She has her back to me but turns when she hears me laugh. She is heavy and has a beautiful smile.

I am sitting beside John. We both have our Iphones in hand and we are reading books. We both like ebooks. I am wearing two hospital gowns, socks and little blue covers on my feet. If I don't think about the fact that I am mostly naked, I am comfortable because it is hot in here. John looks at my socks and asks me if they are mine. They are. The only thing I was allowed to keep on.

My name is called and I think What? I look up and see a man looking at me with a friendly look on his face. Is this my doctor? I only met him once before. This guy does look familiar. He leads me around the corner and into a small interview room. He says he noticed my name on the board and wanted to know what happened to me, why I didn't show up for my follow up? Oh Crap, this is doctor number 1. This is the doctor I didn't want to see a second time and here I am sitting in a freakin' gown.

I didn't want to do this but I had to. I had to break up with him to his face. I had tried to avoid it. I took a deep breath and told him that I had cancelled my appointment because I didn't like the experience of having my appointments in the clinic. I do not like to wait for appointments for over an hour and it seemed likely that the waiting would be the norm.

Yup, that would be the equivalent of, "It's not you, its me." I was at a disadvantage, I don't like to hurt people and there just seemed to be no point to tell him that I didn't think he listened to me, that he seemed to full of himself and too sure of his specialist ways and didn't connect with me his patient. I couldn't tell him that I expect to be a partner in my medical team. I didn't tell him that he really pissed me off.

I smiled and let him down easy. I made sure he knew that I had cancelled our last meeting, I had not stood him up and then I thanked him for checking in with me when he was me.

Then I shuffled in my little blue paper booties and black socks back to my chair in the semi-private/waiting room, past the lady with the nice smile and the silent couple over to my corner.

If I hadn't been starving and if my colon hadn't been so shiny clean from the fabulous klean-prep I might have shit myself or thrown upa little bit into my mouth. But I didn't.

And all of this happened before I had my colonoscopy. I will have to tell that story soon.

Sunday, January 24, 2010

The good and the bad

The good news is that I am not in really bad shape. The bad news is that I am officially in another flare.

The good: the colonoscopy went without any difficulties
The bad: I have been bleeding and in more pain since the test

The good: there is swelling up the left side only
The bad: the new doctor suggested some of my pain may be caused by irritable bowel. (What a bunch of crap)

The good: my hair stopped falling out
The bad: it might start to fall out again.

The good: the test being in the hospital with many others booked seemed to keep everything on schedule. I didn't wait at all.
The bad: the tight schedule prevented much discussion with the doctor and I don't really remember much of what was said. My partner was not included in those discussions.

The good: the drugs knocked me out completely and I didn't feel a thing
The bad: I feel worse now and don't expect a speedy recovery.

The good news is that I wasn't told to take Prednisone! The bad news is that I have to increase my mezavant (the reason the hair may start to fall out again) and it can take 4 weeks before it helps.

The good: I am nearly finished with this post.
The bad: The need to post will never end.

Thursday, January 21, 2010

Oh Gawd

That stuff is terrible. All the things I read about it were true. It tasted terrible, smelled worse and seemed to never end. By the time I was finished I wasn't feeling too good. I was freezing and tired and miserable. I don't ever want to spend that much time in my bathroom.

I don't know why a doctor would make someone use that when Pico is so much easier and very effective.

I don't have to take any more and my lovely daughter brought me some broth, juice and jello to help me feel a little better. I just have to wait for the scope. I think I will focus on the fact that I have the day off and I will have good drugs.

Wednesday, January 20, 2010

Eating Extravaganza

So tonight I am having my night-before-the-Prep Eating Extravaganza!

Well okay that is a bit of an exaggeration. I ate pasta out of a can tonight and I enjoyed it! I usually eat fresh good quality meals. Every once in a awhile, when no one else cares and I just can't cook something when I get home late, I eat some crap. It will probably move through me easier than fresh vegetables and fruit at this point. This scope turns out to be quite timely. I think I would be contacting the doctor if I didn't have this scheduled already. I had 5 trips to the bathroom yesterday, lots of cramps.

Tomorrow I get to use Klean Prep for the first time. I have only used Pico-Salax before and found it easy to use and effective. My new doctor prefers Klean Prep so I agreed to give it a try. I have read a lot about it on blogs over the last year and I must admit that I am a little concerned. That is a lot of fluid that I have to get down.

On the brighter side, my daughter came home and made me cookies and jello. The cookies are for tonight and the jello is for tomorrow so that I can at least have the sensation of chewing! What a great kid.

I am lucky.

Thursday, January 14, 2010

Toilet Dreams

I woke up Tuesday morning with a start. The image from my dream was still vividly suspended right before my eyes.

In my dream I went to the bathroom and incorrectly sat myself on the toilet. My aim wasn't good. From my body I expelled blood, mucus and parts of my colon. I looked down and there it all was on the floor and I could see parts of my anatomy that I shouldn't have been able to see in that position. I was very upset with myself for the mess that I had made. I was very upset that parts of my colon were on the floor.

What was missing from the dream was the pain. There was no pain. It just happened without any feeling. Could it be that I forgot the pain? I mean what it really feels like when you are in a flair?

If I did, I no longer have that problem. After days of discomfort, moments of concern, tonight the pain really hit. The worst of it is in my upper left abdominal area but it hurts on the right when I am cramping. I had to close my eyes, take deep breaths and talk myself through it so that I could get up and go to the bathroom. The worst of it passed, I went to the bathroom, I expelled a small slightly pink and mucusy bm.

I increased my meds back up to the full dose on Monday because I was thinking something wasn't quite right. I think that was a good move but maybe too little too late. The silver lining is that the colonoscopy is only a week away now so we will know for sure what is going on and we can treat it accordingly. I just need to get through the next 7 days.

Monday, January 4, 2010

January 2010

January can be so tough. It actually snowed enough that we had to pull out boots today and brush off the car. It was cold outside and it was cold inside. Everyone went back to work and school today. Everyone I talked to, read about or heard from was tired!

I have planted myself on the couch and I seem unable to do anything productive. I am so tired it almost hurts. We had company for the last 5 days and we had more fun than we could have planned for. It was hard to see everybody go but it is also good to have the quiet and the calm now. Hopefully I feel rested sometime this year, I mean this week!

I have started the countdown now that the holiday is over. I have a colonoscopy coming up on January 22. Everything about this will be different. I have a new doctor who does this in a hospital (my old doctor was able to do these things in his office). I don't like hospitals much. My new doctor prefers a different type of prep. I used pico salax last time and it actually wasn't too bad. I had to use it twice, once in the morning and then at dinner time the day before the test. It did what it was supposed to do but I didn't have to drink gallons of yucky tasting stuff. This time I have to drink gallons of yucky stuff. I know that the colonoscopy won't really be all that bad. I will take the drugs and drift away and they will check me out and then I will know what kind of shape I am in and that will be good since I don't trust my own judgement anymore unless I am bleeding. I really just have to deal with change here because the test itself is a good thing.

I have continued to have sporadic pain, discomfort and sometimes I feel like "I need to go" and I can't. Other times I have to go! I am still fighting the fungal infections and despite the medicine that has been prescribed to me (nothing very strong as my g.p. feels they will destroy my liver) I have made little progress. I don't think I have lost any weight but I am hungry all the time and I am craving things like chicken and potatoes not chocolate and snacks. I am either so tired that my body needs extra fuel or I am starting to have absorption issues.